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Choosing A Path

Starting Out

Recently, I’ve been working with a few people who are new to the Biotoxin Illness scene. They have been getting increasingly sicker. You know, hair loss, weight gain, auto-immune issues, hormone imbalances, anxiety, and so on. They’ve been suffering some time before finally figuring out they’re moldy. As such, they’ve learned quite a bit about particular subjects and have realized some improvements in their health by taking natural desiccated thyroid, supplemental doses of bio-identical hormones, completely changing their diet (lots of raw veggies, organic meat, and only select few grains if any), and so on. Nonetheless, their improvements have been limited.

So it’s exciting to look forward to even more improvement as they clearly have Biotoxin Illness that was preliminarily diagnosed using the information on the Are You Moldy blog post. However, in working with them, I’m reminded of just how far I’ve come and just how difficult and confusing it can be when first starting down this path. First and foremost, if you’ve got Biotoxin Illness, chances are it’s totally messing you up. For me, having a pair of dreaded 11-3-52B genes meant the symptoms got so bad I looked forward to dying – “please just let me die; I can’t do this anymore”. When anxiety, dread, and fear, are combined with a less-than-functional mind and a body that has hormones on a roller coaster ride, it’s really hard to do as Dr. Shoemaker recommends and just try one treatment at a time. Forget that – I swallowed every pill and therapy that came along that looked even remotely promising in an effort to try and squelch the unbearable symptoms. It was a living nightmare!

Against that backdrop of intolerable symptoms, everyone and their brother seemed to have an idea of how to get better from mold. You have to treat parasites first. You need to do lots of ozone or HBOT. You need to take charcoal and clay and chlorella. No wait, Dr. Shoemaker says he’s tried all three and they don’t work – only Cholestyramine and Whelcol are statistically proven. The list of contradictory therapies is mind-numbing and if you hadn’t already given up hope of ever getting better, giving everyone’s opinion the same weight will take you ever closer to total disillusionment and dismay – hence this blog on Choosing A Path or perhaps another title might be The Fog of War with Mold.

Not Everyone is the Same

In listening to the latest from Dr. Shoemaker on genomics wherein genes are used to make better diagnoses and determine what treatment protocol will be effective, it’s quite clear that a one-size-fits-all approach to addressing mold illness doesn’t always work. This is why Dr. Shoemaker has been working on these types of projects – because not everyone responded as well as expected to his treatment protocol. Lots of people do well but there is a small percentage that still struggled to one degree or another.

For the moldy person looking for answers, knowing this is a double-edged sword. On the one hand, it says that just because one person got better with a certain treatment protocol doesn’t mean it’ll work for another. On the other hand, I believe it is held up all too often to explain why Dr. Shoemaker’s very solid treatment protocol didn’t work when in fact it was never adhered to in the first place due to either an incomplete understanding on the part of the Physician or lack of compliance on the part of the patient. I’m not trying to lay blame in particular or say that moldy people aren’t trying to get better. We all know we are trying desperately to recover even a semblance of our former lives.

It’s just that I know first hand and have seen it in others too that when symptoms are really bad there is no way you’re going to sequentially walk through Dr. Shoemaker’s protocol or anyone else’s. You’re going to change your diet, you’re going to take supplements, you’re going to take anti-fungals, and so on all at the same time. If you get a bad reaction, who knows what you’ll attribute it to but it’s quite possible that Dr. Shoemaker’s protocol or whatever else you were doing in the last day or two will be blamed. Again, I’m not saying that moldy people aren’t capable or that Dr. Shoemaker’s protocol works flawlessly. I’m just being honest about what I’ve experienced. It is VERY difficult to discern what’s helping and what’s not when you’re really symptomatic.

In my experience, it can take a good 24 hours or more sometimes before I realize I just took a mold hit. I may mistakenly equate symptoms with some stressful activity. Furthermore, if it’s a really bad hit like when I foolishly helped with reorganizing in an old barn, the symptoms can linger for up to a week – even though I’m treating with a protocol that works for me. In that amount of time, I can and have made lists of at least a dozen factors that may have contributed to these awful symptoms. Having to re-experience bad symptoms is like getting re-traumatized. My brain isn’t working right either so when I don’t see immediate relief everything starts to look suspicious. Especially if you don’t have a lot of experience clearing symptoms and getting re-exposed, it’s just human nature to latch onto the first or second association that pops up in our brains and lay the blame there. However, given the delayed reaction and recovery times, this will likely lead to discarding of very helpful therapies in moldy people first starting out. Perfectly good treatment get caught in the cross-fire of the mold war.

You need to have steely nerves. You have to evaluate the merit of a given protocol and then hold on even when it gets bad because it’s just really hard to know straight off what’s increasing or decreasing symptoms. I’m not saying you should stay with course of a given treatment no matter what. I’m just saying you need to be able to try, re-try, and then try again a seemingly problematic therapy before you can accurately conclude it really isn’t helping. The degree you try to return to problematic treatments should be based upon how proven they are. I know, it’s really, really hard to do this.

To help, I highly recommend that at a minimum you journal every time you take a turn for the worst and every time you get better. Over time, you’ll be able to pick up on some patterns. Also, you’ll have a timeline and recount of symptoms in your own words that will be invaluable in determining what’s helping and what isn’t’.

On the flip side to knowing one size doesn’t fit all when it comes to treating Biotoxin Illness, moldy folks struggling to wade through all the purported cures to Biotoxin Illness lose sight of the fact that just because one person got better using HBOT or some other treatment doesn’t mean it’ll work for them. When you’re really symptomatic, one-off stories of success are so tempting. After all, they said they had mold and they got so much better. Maybe it’ll work for me. The only trouble is that when you start throwing treatment upon treatment into the mix, it’s virtually impossible to know what’s helping and just as important, what may have brought on an exacerbation of symptoms.

Here’s where you need to engage some critical thinking. For example, if the person who recovered using HBOT doesn’t have definitive proof either in the form of lab work or by having studied mold for years and gotten real improvement through mold avoidance then you can’t really be sure if they are even moldy – have susceptible genes that are now being expressed – they’re moldy. Furthermore, even if they do have proof that they’re moldy, what’s their specific HLA DR genotype? Do they even know? If they do then is it the same as yours because if it’s not then who’s to say what worked for them will work for you?

For all we know, maybe they don’t even have moldy genes and fall into the roughly 5% with CIRS from mold but without weak genetics that will get better more or less just by removing themselves from high exposures. If they were doing HBOT and got a new job in a building that wasn’t moldy, they may think it was HBOT that cured them when it was really just getting away from mold. On the other end of the spectrum, 11-3-52B or 4-3-53 haplotypes are notoriously reactive to even slight mold exposures, tend to suffer more symptoms, and are harder to get better. For a multi-susceptible genotype like this to give a lot of credence to a non-proven treatment protocol from someone with a less problematic non-moldy or mold-only genotype may result in a lot of time and money being wasted on fruitless treatments. So who do you trust?

Who Do You Trust

Given what’s been said about the difficulty in evaluating a given treatment along with the variability in knowing if a given person is really moldy and whether that person has the same genes as you, it is really tough to know who to trust. For me, I got totally lost listening to one expert or miracle cure after another. They all seemed credible and I so needed a solution. It was really confusing and disheartening. However, over time I came up with a way of assigning value to the diverse information I was reading. Here’s how I currently prioritize information from most useful to least.

Doctors and studies that successfully treated people with lab work proving Biotoxin Illness. I give information from these sources the most weight. They test their patients and know exactly what HLA DR haplotype their patients have so I know they’re treating moldy people – not that other doctors that don’t do this testing aren’t treating moldy people but if a person gets better using a protocol the question that arises in my mind is if they really were moldy or did they just have Lyme or something else. If I can’t be sure if they were moldy, then I definitely can’t be sure if what worked for them will work for moldy me. Also, it’s a given that the Physician has a proven track record of success. Ideally, the Physician is willing to share data showing how successful their treatment protocols are for folks with my particular genes.

Individuals with lab work proving Biotoxin Illness that have healed themselves – assuming it’s the same class of genotype and there aren’t any other medical conditions either on the part of the healed individual or the sick person. It may be surprising to you that I give more credit to what this group of moldy individuals has to say about how to get better over and above Physicians that treat all sorts of folks with chronic illnesses and do so with a reasonable degree of success. Assuming there are no other outstanding health conditions that set us apart, I believe that moldy people with my genes are best suited to determine what will work for me. Granted later on down the road when Dr. Shoemaker refines the genomic picture, I may need to further restrict the group of moldy folks that match my gene expression, but that’ll just make what those with my same genes have to say about getting better even more pertinent. Of course, these people must have really gotten significantly better. In other words, they are holding down a job, they are once again optimistic about life, they feel good, and so on. To the degree they’ve been able to realize lasting recovery, I increase the weight of what they have to say.

Doctors that successfully treat people that they have mold issues using some other method than strictly lab work – like a Dr. Klinghardt. Now I know I’m probably walking on thin ice here. After all, physicians like Dr. Klinghardt have helped a lot of people. He’s also amazing in his willingness to try different therapies and work outside the conventional drug paradigm. I personally would be more than happy to be treated by Dr. Klinghardt. Of course, as with any doctor, I’d continue to engage my own critical thinking, asking for lab work, and evaluating for myself if I thought a protocol was working. Nonetheless, he’s got a huge body of experience in helping folks with chronic illness and this must be respected.

On the other hand, I also see a constant changing of approaches. This happens because new information is learned or a given treatment is found to be at a minimum less helpful. In fact, I was treated by a wonderful Naturopath that used Dr. Klinghardt’s methods. Although much of what was prescribed was ultimately in the direction I needed to travel (gut health, stress, anti-fungals) just as much or more didn’t have any impact.

At that time, Biotoxin Illness wasn’t on Dr. Klinghardt’s radar and as such, it wasn’t diagnosed in me. Instead, I was diagnosed with Lyme, Babesia, Bartonella, adrenal fatigue, gut issues, and few others. Now I’m not saying this approach can’t help a lot and no one can be blamed for not knowing about a new illness, but what I came away with is that the chances of success with this type of physician is highly dependent on their experience, body of knowledge, and intuition. It’s a treatment method that is far removed from the cookbook approach you get with a Dr. Shoemaker wherein if you follow a specific protocol.

To give you a better idea of what I’m talking about, once again I tread on hallow ground for some in broaching the subject of ART – Autonomic Response Testing. Using this method, vials containing pathogens or remedies are held up to the patient and based upon the perceived resistance felt when trying to move the arm of the patient who’s been instructed to hold it fixed, the physician is able to tell if the person suffers from a particular malady or if a treatment will work. It may sound a bit far fetched to the uninitiated, but it is widely used in alternative medicine and does hold promise from where I stand.

Nonetheless, I’ve found that ART is highly practitioner dependent. In other words, what I’ve seen is that you get treatment protocols that not only take into consideration what will benefit a person’s body, but also what their psyche is willing to accept, along with an inter-mingling of the belief system of the ART practitioner, and who knows what else. For example, I’m not at all convinced that if a practitioner doesn’t like a particular supplement line that their personal bias doesn’t in one way or another show up in response testing that indicates those same supplements don’t work for a patient. After all, if merely holding up a vial of a pathogen next to my body induces a noticeable reaction in my muscle strength, then it stands to reason that my personage wouldn’t also be picking up on the practitioner’s bias and consequently be responding to that too. Practitioner’s rarely make a diagnosis or recommend a treatment not knowing ahead of time what is held within a particular vial. It seems to me that all sorts of bias get baked into the ART cake.

Who knows; maybe it’s good that lots of unseen factors are taken into account with ART. However, how am I to know that the sum total of these factors aren’t actually steering me toward poorer health? If I trust the doctor, then maybe it’s OK if I get worse. Maybe in the big picture this is actually most helpful. Unfortunately, when I’m getting beat up badly by Biotoxins, I’m just not big enough to embrace a bigger picture that results in me having to stay in Hell. Now most certainly, the treatment protocol will be adjusted when it’s seen to be not working but that takes me back to my point about this approach relying more heavily on a really experienced and intuitive Physician.

Loved ones that spend months and months studying what could be wrong, consult experts, and then offer suggestions as to a best approach to recovering health. The loved one could be yourself. Depending upon how much time the person spends studying, they could move up this scale to as high as 2. I’m not talking about someone that reads a couple of books. I’m talking about people that are highly motivated to either help themselves or a loved one with a personality type that is highly focused, dogged, and pragmatic. This is a person that knows what critical thinking is all about and digs until they find the answer.

Individuals that have gotten themselves better after getting sick from mold. At this level, the information that is useful is very limited and you can expect to have lots of failures following their well-intentioned advice. There is so little rigor both in knowing exactly what they were sick from, as well as most likely using a methodology that does not have any way of knowing what exactly allowed the person to get better that the likelihood that there is any overlap between what they perceived to be healing and what will actually help you is very small.

Everyone else. At this level, you might as well read People magazine and see if you can glean any good ideas there.

Keep Working the Situation

Being a guy and a former construction worker, a part of me is all about what it takes to get a job done. This combined with an engineering background that likes to understand how things work, I believe helped me in getting better. Over time, I refined the way I prioritized information and learned how to better evaluate if a therapy was helping. There is a story about a student jet pilot that relates to this way of thinking and ties into recovering from Biotoxin Illness that I’d like to share.

In the story, the student intentionally puts his plane into a spin and then goes about recovering it. There is a protocol for doing this. Even though the G-forces are extreme making it very difficult to read gauges and keep situational awareness, the student needs to learn how to stay focused and execute on the procedure even though a part of him or her just wants to freak out. However, this time the procedure doesn’t work. The plane remains in a flat spin. Unlike lighter aircraft, a jet is basically a rock with little wings for steering once the engine gets lit up. No engine, and they don’t glide to the ground; they drop like a rock.

So after two failed attempts with the ground coming up fast, the instructor takes control. At this point, the student is so freaked out he’s finding it hard to just call out the altitude as they plummet toward the ground. The instructor tries again with no luck. Finally, inspiration steps in and the instructor blows the canopy because after all there are only seconds left before they’re going to have to eject. However, the instructor KEEPS WORKING THE SITUATION. He doesn’t give up. The change in aerodynamics resulting from blowing the canopy is enough such that one last try at recovering the plane works!

The student gives up jet flying. He’s seen what a dangerous business it is. Being moldy, we don’t get to walk away from mold – an equally dangerous business. We have to be like the Instructor. We need steely nerves. We have to execute on the protocol but we also have to realize that when it’s not working that it’s time to go to plan B. We have to keep working the situation. For what it’s worth, I believe that you can recover. I believe you can get better just like I did. The blog How I Recovered, is a good example of a guy who just keeps on swinging.

About Attitude

At this juncture, I’d like to take a minute to talk about attitude. Now you may be thinking that I’m going to give you yet another talk about how you need to remain positive. After all, we know positive thinking helps boast your immune system, makes you more resilient, helps with depression, and so on. Cool. So to the degree that you can step outside and bask in the sun, enjoy conversation with a loved one, play with the kids, meditate, or journal, then go for it.

However, what I found for myself is that an illness can get bad enough that at a certain point positive thinking just takes a whole lot of energy that you don’t have. That is to say that typically embedded in the message of positive thinking is that you can’t give up – that you have to fight! And while that approach is OK, it necessarily assumes you have the energy to fight. I can tell you for myself, there is a point where this is no longer possible.

So instead, I’d like to suggest a modified version of positive thinking. Instead of starting from a place where it’s not OK if you don’t get better, you need to start from a bigger perspective – one that isn’t so me centered. More specifically, if we’re really honest, the bottom line is that Life can be really brutal sometimes and it doesn’t always work out the way we want. Good, bad, or otherwise, this is just the way it is.

That’s why when people used to say to me, you have to “stay positive”, a part of me resisted this because I knew full well that I might not get better. To “stay positive” meant I had to somehow ignore the fact that Life doesn’t always turn out like we planned and given my analytical mind, this just did not compute. Even more importantly, I knew the moment someone said this that they hadn’t seen the greater depths of Hell I had because they would know there are places and states so bad that all hope and fear are completely demolished where all that is left is complete surrender – anything else is tantamount to spitting out insults at a very skilled sadist who has you stretched out on the rack. In this place, you learn that total surrender is actually a gift from God that you graciously receive.

So, OK that’s pretty deep but nonetheless true in my experience. Getting back to “staying positive” I would suggest that for some it may make sense to take into account what I’ve just discussed. More specifically, instead of talk that is suggestive of a battle like “I can do this; I’m going to get better; This body can overcome illness” that you consider statements like “The world is beyond my comprehension but I believe in Love; No matter what happens I will do my best to bring Love into the world and that includes this body; When the worst happens and this body and mind fail, I pray that Love will find a way to embrace me and take me home”. In so doing, one remains positive toward Life while embracing more of its totality.

So that’s it. From what I’ve seen, sooner or later Life will require that you give yourself over to God – in whatever form you’d like to think of Him/Her. For me, this came before this body physically died. Learning to appreciate the deep teachings in this experience is what it means to be Human – inspired with God’s divine wisdom. It’s so incredible to see how time and again people quite naturally take the most horrific experiences and turn them into something wonderful. This tendency is embedded within our Being and is truly spiritual in its nature. I’m in awe of the Human Spirit.

10 thoughts on “Choosing A Path”

This was really well written and helpful. Thank you for sharing that and giving some hope to some of us who have not improved much thus far. I especially like your piece at the end around love and bringing love into your life and into the world. There is no doubt this illness creates a depth and wisdom within ourselves that may have been impossible to reach or gather had we not gone through this.

My Mom, daughter, and I were poisoned by 11 kinds of Mold due to siding being put on our house..where the contractors covered 18 of our foundation vents which grew for 2 &1/2 yrs.without our knowledge until My Mom drop dead in my arms Feb.1,2000 without any warning! We had No idea why she died! 23 days later my daughter & I were ordered out of the house..never to enter again..could only take keys, drivers license & credit card! Entered a 2 yr.lawsuit..house with All contents was torn down & hauled away in 18 wheeler’s for 6 hours in E.Texas.We were sent to 3 Drs.two times during lawsuit.My Mom died as it got to her lungs! I have Lupus, Fibromyelagia, Chronic Fatigue, IBS, hypothyroidism, ongoing low grade fever, sleep deprivation etc.I haven’t had anyone to even talk to about any of it in 12 years, let alone be treated? My daughter is in denial but has had numerous respiratory infections in Nashville! I have lived in Santa Fe 12 years without Any treatment! Just any symptoms that might be related to something else as if I mention MOLD I get the Look? Also, We both had a PET SCAN on our brains at U.C.L.A.Both have Brain damage! I was a high fashion runway model for 20 years and had a life! Now, I stay in my house with my 135 lb.English Mastiff..usually just leave the house to get food when needed! Due to cognitive problems people think I have mental problems, including a neighbor I saw face to face for 30 minutes later emailed me suggesting I get help with whatever mental problems I’m dealing with! I’ve been out of state for 3 months but am anxious to send this information to him thanking him for his concern of my mental status! I also have balance problems..which I definitely did not have walking down thousands of runways doing fashion shows..As well as teaching private students how to walk & Turn

Thank you for sharing your story. I think it’s so important that they are told and heard.

I’m so sorry to hear about your Mom – really terrible. If it’s any consolation, I can’t imagine a better way to go than in the arms of a Loved One.

Twelve years is a long time to live with those set of symptoms and what sounds like very little relief. For myself, I can tell you that the range of symptoms I experienced was stunning – including “sideways” thinking driven by serious cognitive issues in combination with roller-coaster hormones. Healthy people just can’t relate.

For what it’s worth, I’d consider looking at Biotoxin Illness. Maybe start by reading my Are You Moldy post and Dr. Shoemaker’s website. I bet you could get some other ideas from the Avoiding Mold Facebook page by Lisa Petrison. If you do have Biotoxin Illness, the upside potential is significant. I’m not saying you’ll ever get back to 100% or that the road won’t be bumpy with other obstacles in the way, but I think it’s possible that you’ll find the energy to eventually take your Mastiff jogging! When you recover a bit of your health, you’ll be in a better position with your daughter to make the case for mold.

I agree that “staying positive” is not the best mindset. Asking for contentment knowing that even the illness itself comes from His hand, and that I truly deserve much worse, has kept me sane, by His grace.

Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.”

Hi, I stumbled upon your website as I was looking up a MARCoNs treatment, and I am feeling so blessed and encouraged to have found this blog. I also have the 11-3-52B haplotype, and truly understand what you mean when you say that you have been through the depths of Hell. I grew up in an extremely moldy house, and basically just thought I was broken my entire life. I didn’t know how I would ever have a full-time job or do any of the normal things that are expected out of life. I am 24, and have only recently began to feel semi-normal, and even really good some of the time. I have been on Cholestyramine on and off for a few months, and have had some days and weeks better than I ever thought possible. I keep having flare-ups though, because I am so sensitive, and the school I go to is moldy, and anywhere I go that is moldy will set me off. I feel like I spend half my time obsessing about mold and trying to prevent exposure, because when I am exposed I am thrown so far into the depths of Hell and despair that I just want to give up. I am so glad that you wrote that in your post, as I feel so relieved to know that I am not alone. I really appreciated what you said about positive thinking. I go to a Buddhist University, and have been very frustrated by being told to think positively. It is exhausting and leaves me fundamentally at odds with the reality of my situation, which is relentless and unpredictable.

I am so grateful for your willingness to share your story and experience. In my better moments I have also found that the depth of my suffering has been a great teacher for me, and has allowed me to better understand the human experience. It is hard to appreciate the lessons when I am in the pit of it though, and there really are times that I want to give up, as it is just so painful and relentless. Luckily, I have a lot of support. I look forward to continuing to read your blog, and please let me know if you have any particular suggestions for someone else with an 11-3-52B haplotype and MARCoNS that I haven’t been able to get rid of. Thank you!
Nicole

Chronic Inflammatory Response Syndrome is serious business. When I take a bad mold hit I get “suicidal” the next day. The day after I feel like crying all day. It’s a real rollercoaster. When I’m in the thick of it, I remind myself that the landscape of life constantly shifts and that I shouldn’t get too attached to any of it.

In Buddhism they would tell you to find your “center” and remain their. However, as you’ve mentioned, when the situation is really tough, finding one’s “center” is seen for what it really is – just more conceptualization. Diving deeper, suffering is predicated upon looking back or looking forward. It requires a point of reference. When I was really sick, keeping any point of reference was extremely painful. It became completely impossible to look out into this world at all. The energy simply wasn’t there to support that level of the play of life.

In this state, there was very little “me” left and not much could be said about anything. There was no “center” because there was no one home to notice. There was no point of reference. All of it was “center” and none of it was “center”. It no longer mattered because there was no one around to care. It was a form of disassociation with my physical body and metal processes because they were simply too painful. It was impossible to hang on. In this state, if there is a bit of awareness left, Life can be seen in its simplistic form as an energetic dance without any “center”. The only caveat is that one has to slow down enough and drop any point of reference along with healing their body to a degree. This is a state that the mind with all its conceptualizations will typically resist with fervor especially when the body is crashing.

I would recommend getting really good at “mold avoidance”. If you go to Lisa’s website Paradigm Change, she’s still has free download links to “Back From The Edge” and “A Beginner’s Guide to Mold Avoidance” – see the right-hand sidebar. They’re full of good information. For those with the cash, I’d recommend supporting her work by purchasing a copy from Amazon. It sounds like you’ve had lab work done but if not, it’s just good sense to make sure you really do have CIRS before committing to all that it involves. If you do have CIRS, then you’ll need to get on Dr. Shoemaker’s mold protocol that begins with living and working in clean places along with taking Cholestyramine (CSM) on a regular basis. You’re young so your chances are good for healing your body more quickly but you have to take this seriously. A little CSM now and then isn’t going to cut it for an 11-3-52B with an impaired immune system. If you don’t take care of yourself, you won’t be able to help others and helping others is important.

If you’re getting continual exposures to higher levels of mold or have a dog, either can hamper clearing MARCoNS. I’m assuming you’re using BEG spray? I also think it’s very important to get on a good diet (maybe even no-amylose) along with taking higher doses of omega-3 fatty acids – fish oil. Of course Dr. Shoemaker would say a no-amylose diet is only required when bringing down high MMP9 and high TGF-beta1 but it’s a good anti-inflammatory measure. You can read up on Dave Asprey’s Bulletproof Diet or Doug Kaufmann’s Phase One Diet. You can read about fish oil in Are You Moldy and on Dr. Shoemaker’s website where there are numerous protocol summaries like the one from Dr. McMahon.

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